Ehlers-Danlos In Fiction

I never meant to drag my illness into fiction. In fact, it’s been something I’ve intentionally avoided. Ehlers-Danlos is a weird genetic mutation. The things it does would make most editors frustrated.

It turns out: it does frustrate editors. A lot.

Without planning on it I accidentally gave the Lee sisters in BODIES IN MOTION Ehlers-Danlos symptoms. Arnoia’s pregnancy is threatened by a late-stage placental tear, something that ended six of my mother’s pregnancies. My mother miscarried in the later part of the second trimester with each one. With modern medicine I might have had older siblings, but with what was available in the late 70’s and early 80’s there was nothing to be done.

Rowena has the fragile Ehlers-Danlos skin although it’s protected by her augmentation. And that’s what my editor picked up on. She noticed a later chapter of BODIES IN MOTION where Rowena cuts the palm of her hand with her nails. “Not possible,” my editor said.

I looked down at the scratches on my hand, deep grooves left from a midnight mosquito bite and itching in my sleep. Nails can most certainly cut skin! But not all skin. Just skin like mine… papery thin, velvety to the touch, changed because of a mutation in the body’s connective tissue.

Changing Rowena and Aronia would have required very little. I could have given Aronia other pregnancy problems, there are many. I could have had Rowena express her rage another way. But I’m not going to.

I won’t name Ehlers-Danlos in text because BODIES IN MOTION is not an Earth-centric novel. There’s no mention of Earth, or the cultures we know, and I want that separation. I am not dwelling on the disease in the book. No one is getting magically cured. No one is going to be debating the worth of their life because of having Ehlers-Danlos. This isn’t a novel for the inspirations market, it’s unapologetically SF and SFR.

But it will be in the series.

So, if you are an EDS spoonie and want a book with a hero like you (or anti-hero/antagonist/whatever Rowena winds up being), here’s a pair of fighter pilots and warriors with genes like you. Ehlers-Danlos is found the world over in every genetic group. It’s hard to diagnose, autosomal dominant, runs in families, and can be undiagnosed for years if not generations. It’s a disease that will undoubtedly follow humanity where ever we go. Now it gets a face to go with it. I have full faith Rowena will Ehlers-Danlos regret trying to hold her back.

 

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